Photo of Alicia.

Alicia’s Story

My story begins somewhat like a cheesy horror movie and turned into a science documentary. 

The day is Friday the 13, 2013. I’m at my company’s Christmas party and I’m having a great time. With my candy cane striped stocking and elf shoes on, I’m enjoying my post dinner endorphins when, suddenly, I feel like someone t stabbed me in the chest. I got all flushed and sweaty. A friend notices me and asks what is wrong and when I tell him my chest hurts, he suggests it is nothing more than heartburn. I think to myself “he’s probably right” as I had just finished a rich Christmas meal, which included a glass of red wine. So, I sit and wait. I take an antacid and sip on water as I wait for the paint to pass.  It has now been over 30 minutes and the pain hasn’t changed. It is now time to go to the hospital, I tell my friend.  

I’m at the hospital and I’m lucky to get medical attention right away. Medical staff run multiple tests. Shortly after they come in to tell me that they have found a Type A aortic dissection, and I need to be rushed to a different hospital so they can perform immediate open-heart surgery. It is now December 14, 2013, at 4:30 am. (13 days before my 31st birthday!) and I’m having my first of many surgeries that start my medical journey.  

I was released from the hospital six days after surgery – and I was feeling fairly great, all things considered. Post-surgery recovery was strange for me not having experienced major surgery or troubles with my health in the past. Most of my body was willing, and more than able, but my sternum was not. Rest and movement were both equally important to healing. The recovery went slow but very well, and I was able to return to my new normal life within the year. 

Given my age and randomness of the medical incident, I was submitted for genetic testing to locate the cause of the dissection. I was first tested for Marfan syndrome and that came back negative. My scans showed arterial tortuosity, so the doctor submitted me again for genetic testing. On September 25, 2015, I received the call to tell me that the molecular genetics report showed a Loeys-Dietz syndrome mutation of the TGFBR1 gene for an undocumented variant defined as c.605C>T. This begun my extremely regularly scheduled MRI scans. My mother received genetic testing and did not test positive for LDS, thank goodness. My biological father does not acknowledge I am his.  

While getting my regular scans, it started to become clear that my aortic root was expanding at an alarming rate. In July 2016, it was confirmed I would need another open-heart surgery due to the damaged aorta and expanding root. On June 9, 2017, I had my second open heart surgery. In that surgery, my aortic heart valve was replaced with a On-X Mechanical Valve and an aortic root replacement was performed. Doctors brought in a specialist to perform a total arch replacement. During the surgery, the anesthesiologist found a ventricular septal defect that they were able to repair on the spot.  

There was a complication towards the end of the nine-hour surgery. When the surgeon was reattaching the subclavian artery in my left arm, the artery kept tearing due to LDS. He could not get it attached and so he just tied off the artery in hopes to prevent a possible future amputation of the arm. Despite this, I’m lucky to have full use of my arm and continue to have no complications with my day-to-day activities. This arm, however, will not get a blood pressure or heart rate reading. 

Healing from the second open-heart surgery went very well. I was able to return to my new normal much faster. Probably from already having gone through one three years prior. And with the repair of the hole and damaged tissue, I was feeling like a young woman – I had so much more energy.  

Life went on, and I kept going in for regular tests and scans to monitor my condition. While receiving my regular scans, it was confirmed that I was having an abdominal aortic aneurysm. It is now April 2019. A vascular specialist has been brought in and a CT scan is booked for October 15, 2019, to investigate further. My doctors did not like the look of this CT scan and surgery was scheduled for November 13 to replace my abdominal aorta and wrap my iliac arteries on each side.  

It’s surgery day and I’m due to have my second open-heart surgery. I’m on Warfarin. My INR is 1.5 and, therefore, I’m not able to get the epidural that comes with this abdominal surgery. This caused the back pain coming out of surgery to be the worst pain I have ever experienced. And this is coming from someone who thought spinal pain from having your chest cracked is bad. Nope, this one is currently top of the list for the worst of the worst.  

After eight days in the hospital, I had to get out of there. I have never been so uncomfortable in my life. Nurses finally agree to discharge me, probably a few days too soon. I rush home to see if I can turn this course. Luckily, after about 72 hours at home I was starting to see a change for the better. This recovery was the hardest trial I have had to face to date. I am currently still healing from this surgery while I write this. About eight months post op. Weight is hard to keep on and I get tired easier now. The lower-back pain is getting better and better each day, but it still hurts. I am nauseous daily – some days better and other days worse. I must be very careful with what I eat to not upset my guts as they “settle into their new home,” as I’m told. As I continue to heal, two incisional hernias have formed in the abdominal scar.  

I continue to go to frequent scans. The scans show that the small part of my aorta – the part that is still human tissue – has a tear down one side. I am being closely monitored by my team of doctors. 

To be continued… 

– Alicia